Friday, January 13, 2012

Should kids with disabilities be denied transplants? Some doctors think so

This is Amelia. She is 2 years old, almost 3. Her mom, Chrissy Rivera, describes her as "a happy child whose perfect day involves swinging in the Pooh swing, batting her favorite toy bug under her toy mat, and rolling around on the living room floor to bang her leg on the dog's head. In her eyes, her life is perfect. And after two years of having her in my life, in my eyes her life is perfect."

She sounds like any little kid, full of life and joy. Amelia's doctor, however, does not think she deserves to live.

Amelia has Wolf-Hirschhorn Syndrome, a rare genetic condition that causes cognitive impairment. Other problems can include heart defects, cleft lip, hearing impairment, eye problems and seizures. Amelia has kidney failure. She needs a transplant within six months to a year.

Her mom, Chrissy, put up a horrific and heartbreaking post the other day about a doctor's decision to recommend against a kidney transplant for Amelia. Please, read what Chrissy wrote and show your support. I'll sum up what happened: She and her husband bring Amelia for an exam, as usual, to The Children's Hospital of Philadelphia. As Amelia sits sleeping between them, they start a discussion with a doctor and a social worker that they think will be about the transplant process. The doctor places two papers on the table. One has the words "mentally retarded" highlighted; the other has "brain damage" highlighted.

The mom gets distracted by those words as the doctor speaks and suddenly, the awful reality dawns on her. The doctor is telling her Amelia can't have a transplant because she is "mentally retarded." In his words, as Chrissy recounts it: "She is not eligible because of her quality of life...because of her mental delays." And it didn't matter if Chrissy, her husband or someone in their family donate kidneys; the doctor claimed CHOP won't do the transplant.

Enraged, tears rolling down her face, Chrissy debates him. She tells him she will fight for her child's transplant. And he says, "I will take this back to the team. We meet once a month. I will tell them I do not recommend Amelia for a transplant because she is mentally retarded and we will vote."

A. Doctor. Said. This.

As a human being, I am horrified. As a parent, I am distraught. And as the parent of a child with special needs, I am out of my head with anger. The thought that a doctor, an ethics committee or a hospital—an excellent, well-respected hospital that treats many, many children with disabilities—could consider a child with cognitive impairment less worthy of a transplant than a child without impairments is mind-boggling.

I Googled around and found an article on the topic printed in the journal of Pediatric Transplantation in 2006. Before the '90s, transplants were considered inadvisable for those with cognitive impairments—a "contraindication." The common thinking was that people with cognitive disabilities lacked the capability to handle post-transplant regimens, but some doctors also "felt ethically obligated to allocate organs based on the individual's quality of life."

In 1995 Sandra Jensen, a 32-year-old with Down syndrome, was denied a heart-lung transplant at two California hospitals because of her cognitive impairments. Advocates fought for her rights and she received a transplant at Stanford. She died 18 months later when her body rejected the medication.

The case made headlines, but did not shift perceptions. Years later, in 2004, a questionnaire about access to transplant centers sent to members of The Arc (the country's largest organization for people with intellectual and developmental disabilities) revealed that 80 percent of people believed that those with cognitive disabilities are discriminated against when it comes to to organ transplant operations.

Chrissy notes this is a prevalent problem in medical centers around the country. It's clear that if a major hospital like CHOP still upholds that people with cognitive disabilities shouldn't be eligible for transplants, not much has changed in recent years. There are many factors that go into the transplant decision, but disability should not be one of them.

The words that doctor used to describe Amelia, mentally retarded, are a clear indication that deep-rooted prejudices are at work here. The thinking that the "mentally retarded"—an antiquated, derogatory term—are lesser human beings is a perception that dates back to times when those with cognitive impairment were locked away in institutions. How doctors can still think that way is beyond my understanding. That doctors can think they are God, qualified to decide who has the right to live and die, infuriates me.

A child with cognitive impairment deserves the same chance at life as any other child.

Sometimes, it helps to contact the people whose job it is to care about a hospital's reputation. That would be CHOP's public relations team, and you can find their names and emails here. Pick one, pick 'em all, and let them know that Amelia deserves a transplant. At this point, it's not even a question of whether or not she goes on an organ waiting list—her family is willing to donate them.

I hope CHOP reconsiders. It describes itself as "one of the leading pediatric hospitals and research centers in the world" but this survival-of-the-fittest approach is the opposite of progressive—it is downright barbaric. If CHOP continues to deny Amelia a transplant, I hope she can have it done at another hospital.

And I hope that any hospital or medical center out there that considers cognitive impairment a "contraindication" for organ transplants reexamines its ethics, its heart and its soul.

Update: CHOP issued a statement on its Facebook page in response to the outrage expressed there, on blogs and on Twitter about Amelia and her transplant. It notes, "CHOP does not have any criteria which exclude patients from being considered for transplant solely on the basis of their cognitive status." This certainly does not explain: 1) why CHOP would even consider cognitive status a factor, even if it's one of many and 2) what this poor couple were told by that doctor the other day. If what he said reflected his own warped point of view, and not the hospital's, then an investigation of that doctor is in order.

Update #2: On Monday, January 16, Chrissy told USA Today that she and her husband had been invited back to CHOP to discuss a transplant.

Update #3: On Wednesday, February 15, CHOP issued an official apology to the Riveras. The statement noted, "As an organization, we regret that we communicated in a manner that did not clearly reflect our policies or intent and apologize for the Riveras' experience." Amelia is under consideration for a transplant.

Update #4: On August 6, 2012, Chrissy Rivera announced that Amelia is officially approved for receiving a kidney transplant—and that Chrissy would be the donor.

Update #5: Amelia Rivera got her transplant in July 2013, receiving a kidney from her mother. As per a USA Today article about her on October 2013, she is growing and thriving.

56 comments:

there is also a second petition which is more general asking for all transplant centers to refuse to ban transplants on those with cognitive disabilities. http://www.change.org/petitions/saving-lives-includes-the-lives-of-those-with-disabilities

This is truly surreal! I can understand the hesitancy for putting a candidate on the donor waiting list when they have such severe health problems that they wouldn't survive a transplant. I thought that was the only criteria that was looked at--and for the wait list. For a young girl that already has a donated kidney from a family member, I cannot see how a hospital can stop it. That's insane!

My son was born with a rare genetic condition as well that caused brain damage. He needed a life saving transplant to treat his condition and prevent any more damage.Our center never thought twice about giving him a transplant. The only reason they should deny a person is if they feel they will not survive the transplant or their chance of survival is low. I am disgusted at CHOP. Is there a possibility of going to another center, maybe Pittsburg?

This is appalling and embarrassing for an institution such as CHOP. It really is disgusting. Who are they to determine one's 'quality of life'. I re-posted this. I worked at CHOP for a few years and while it is a wonderful place and saves many lives, this actually doesn't surprise me, they have their heads so far up their rear ends... I hope they change their minds instead of looking like a huge bunch of a-holes (sorry). You'd think they would want to uphold a better reputation...

I'm co-director of a nonprofit for children with rare genetic disorders. I just shared this on our organization's Facebook page (Abi's Place) hoping that some of our families can reach out to them and provide experiences/support. It's so heartbreaking :-(

Thank you, Ellen and Sunday for giving us a way to take action on behalf of Amelia and all children. I've signed the petition and am urging others to do the same. Chrissy - you and Amelia and your family are in my prayers.

My daughter is around the same age as little Amelia. She also needs a kidney transplant. A former preemie with mild motor delays, we are aware that without the transplant, her kidney disease will mean a miserable life, dependent on dialysis. Like Amelia's parents, we are eager to offer up our healthy kidneys - what parent wouldn't? I cannot imagine being prevented from doing so. I don't see how this CHOP decision is ethical or even legal. How about do no harm??? You can bet I will be signing that petition.

Children's Hospital of Philadelphia is one I considered when I was about to give birth to my daughter who was born with a Sacrococcygeal Teratoma, a teratoma on her tailbone. CHOPs is one of the premier hospitals in the country for kids and infants with SCT.

After reading this, I'm glad I chose to have her in Atlanta, instead.

That said, I wonder how often children with developmental disabilities are denied, across the country. Are people who end up brain damaged through accident and no fault of their own, also passed over for organ transplant, albeit much more quietly?

Recently a similar issue came up in Canada...the child's family was basically told he should die by Canadian doctors. Somehow, doctors at Cardinal Glennon heard about the boy and paid for him to be flown to St Louis (a host family took in the mom and dad so they had a place to call 'home') the boy was given whatever operation he needed.........and once he was stable he was flown back to Canada.....The end result is still an early death (I think he already died) but the big picture is the family was given a few more months with their son. I wonder if she could contact Cardinal Glennon?

Hi there, As another mother of a child with Wolf-Hirschhorn Syndrome, I want to say thanks for taking to the time to write about this. Hope you don't mind, I have linked this on my blog too. Anna@blogaboutabloke.com

Great and thoughtful post.I too am completely appalled.My son Will is followed by CHOPs autism clinic where they try to "enrich" his life.what hypocrites they have turned out to be! Apparently if Will needed a transplant, he'd be denied.Sickening.

I also wrote about this on my blog. I hope we wake up every single special needs parent. This is a crime.

Unbelievable, no other word can describe the heartless actions of this doctor. They will spend millions keeping people alive in a vegative state, but not give a child the chance to live because they decide that the child's quality of life is not to their standards?? I could not help but email every member of the CHOP PR team to voice my displeasure. And I hope everyone else who reads this does the same.

As someone else said, this is our future if Obamacare is fully implemented and not overturned by the Supreme Court. lives are quantified under a government system. Outrageous? You bet! Remember this in November when you head to the polls to vote.

I am in the minority on this. There is a lifetime of a serious and critical regimen of drug and diet. There is a question of her ability to conform to this to keep the kidney transplant alive on a long term basis.

On the other-hand, the donor kidney is not going to anyone else. Yet there is still the worry of the impact on the donor's life.

There is too much information that is unknown (that cannot and should not)be released, due to hippa, that has a greater affect on this story.

The emotional plea is endearing, but there is plenty that is unknown to us, the general public. Information that we need not know.

I signed the petition. I also posted links to this post, the petition, and the original post on facebook, twitter, and Google+. Hopefully that will help - You really don't want to get a bunch of teachers angry at you because you are mistreating a child.

My Mom was a medical researcher in some of the first kidney transplants. She would be horrified at this.

We do not live in an ideal world and the question is not: should a child with a disability be entitled to a transplant? To which the answer is a resounding yes.

In the real world the question is often: We have one organ, do we give it to child X or child Y? Imagine child X is a healthy child who is likely to have a normal life expectancy whilst child Y has a severe disability and is unlikely (even with a transplant) to reach adulthood. In that case an objective approach dictates that child X must get the organ over child Y.

A couple of caveats to the above:- Child Y should always still be entitled to a place on a transplant waiting list (even if in reality they may be unlikely to ever reach the top)- Where the organ is from a live donor, that donor should be able to choose to give their organ to Child Y.

We were told this twice, by two different transplant teams at TWO different children's hospitals!!!! We got the same party line, almost verbatim, that people with Down syndrome were never put on transplant lists because they don't want to "waste good organs."

Right now, we'd have avoided the transplant issue, but it is never far from our minds. I hope we as a community can make a measurable change here.

Ellen, there are still many children living in institutions receiving appalling care, it its definitely not a thing of the past. While we are focusing on the issue of transplant refusal based on cognitive impairment it is extremely difficult for Me to believe that is the true underlying rational. Life expectancy is probably the real issue.Off topic, the new bio ethics coming unto its own in society,(see Peter Singer for a taste of it) and the Groningen protocol(you can read about it on my blog) means that the situation will become much worse. As a matter of fact in Holland it already is.

This is heartbreaking. I've worked with individuals with developmental disabilities practically my whole adult life. I also have a sister affected with neurofibromatosis and a daughter with Asperger's Syndrome, so this is my life's work. To know that medical community views some life as more worthy that other life simply based upon intelligence? ability to be productive to society? actually, I don't know how they can justify this. I find myself unable to complete this post without fury. Potential recipients don't have to get screened for these criteria. Why do these factors even come into play for this child? As far as aftercare, this is also not asked in life-threatening situations. It is just done. In this case, it is already planned out. I'm beside myself.

FILTH.just filth.this doesn't suggest that they think she is a "lesser human"...but NOT human at all. so do we then start saying "well, her IQ is low...I mean, she'll probably just be a waitress so let's save that lung for someone who is more likely to get an MBA..."FILTH.

This is terrible !!!. I have a cousin with sever mental and physical handicap. when she was born my aunt was told she would not live pass the age of 5, she is now 30+ years old. Very happy girl in her own world. Everyone deserves the same quality of life, actually people with handicap should receive even better attention cause i think we should take care of the once weaker than our selfs, not get rid of them through discrimination.

Biomedical ethics presents all sorts of dilemmas-and as a nation, we do need to think about how funds are spent. Let's not blame that on Obama, thanks very much-it's not new in the past 3 years. Think about it, is it ethical to do a lung transplant on a 90 yo smoker? A liver transplant on homeless schitzophrenic alcoholic who has repeatedly failed attempts at rehab, a murderer/rapist now with exemplary behavior since in the prison system, or a much beloved child w/ multiply handicapping conditions who may well not understand all she is suffering through for her parents to have her a short time more? I wouldn't want to be the one to make these decisions and while it's easy to be angry if not outraged with the medical professionals who are forced to-I don't envy them one bit. Certainly there is more to any case than we know. If your child or sibling or parent needed the organ or the transplant funds for another life saving procedure, you might have an easier time justifying who it should go to. While the medical profession is often not elegant in how it delivers diagnoses and decisions, I promise you there is careful thought and angst that goes into those efforts. I am an allied health professional-some days are heart wrenching and others uplifting. I would hope we all do our best, just as we do as parents and in our own communities each and every day. I would also hope we presume that others do their best before we judge them too harshly. Have a nice weekend, try to live in the present with whatever time you have, eat dessert first, drive carefully, play in the snow, watch Disney movies and make treasured memories...any of us could be lost in an accident tomorrow-time is what you make it. Time for me to sign off and play with my children!

I am outraged and saddened. I hope you don't mind, but I posted a link to the petition as well as your blog on my Facebook. Amelia deserves this transplant. What hurts my heart is that this could easily be my Matthew :(

To those of you who've had a knee-jerk "It's Obama's fault" reaction: as others have stated, this particular situation has nothing to do with him or his healthcare plan. A transplant for this child would have met with the same resistance during the Bush administration, and many, many administrations before that. As Rose says, "This is about Amelia, ableism, and bad practices.

And to anyone like Eric who thinks an underlying issue here isn't the doctor's (and others') belief that children with cognitive impairment aren't worthy of transplants: Please explain why, then, this doctor SAID THAT to this couple—that her "mental retardation" (as he called it) was the issue. And check out the link to that study I posted from Pediatric Transplantation.

Obviously, there are many factors that come into play for who get on the waiting list for organ donation—but in this case, the family is saying they would make the donation and the doctor denied them. I.e., Amelia is not even worthy of their efforts/operating time.

It is impossible to deny: There are doctors out there who think people with cognitive impairment are less worthy of life.

This is outrageous!! That doctor must not know anyone personally with special needs. If he did he would know children with special needs deserve life just as any other child deserves life. I would like to see one of his children denied an organ based on their IQ or based on their hair color... It would be ridiculous and would not make sense. The same as denying an organ based on cognitive functioning.

I am a mother of a young man with severe, multiple disabilities. I am also the author of a book about our struggles to create a good life for our son - it's called "The Four Walls of My Freedom". I've been blogging recently about this pernicious trend to limit treatment options for those with cognitive impairments. Anyone who loves someone with such disabilities should be worried. My blog can be found at: https://donnathomson.blogspot.com.

This is so heartbreaking! It never entered my mind that a doctor would refuse to treat based on cognitive status. I understand that they must take into account many factors, but cognitive status? This really makes me angry and sad. I can't even look into my son's future without wondering what I would do if a doctor said that to me.

This Darwinian approach to medicine on the part of Amelia's doctor and CHOP is truly appalling. If her parents are willing and able to both provide the organ as well as provide her with all the care she needs to live her version of a happy and productive life, how is it anybody else's place to deny them? So very disturbing :(

I feel there is so much that is wrong here, but the statement the social worker made about Amelia needing another transplant in 12 years? No one can predict the life of a transplanted organ; my transplanted kidney has been working for over 17 years and I have been off all immunosupressive medications with no episodes of rejection.

So much about this angers me but no one can predict the medical outcome of someone who has a fighting spirit.

Thank you for blogging about this. I have signed the petition and have also blogged about this situation as well.

People can find more ways to communicate with CHOP at http://www.chop.edu/contact-us/index.html

The organization "Not Dead Yet" has also blogged on this situation. This excellent organization campaigns to educate medical personnel and the general public that, no, a disability does NOT diminish one's capacity to enjoy life, YES, the lives of people with disabilities are worth living. It's sad that people actually need to be taught this, but "Not Dead Yet" has been working on this huge, uphill battle for years with some success in heightening the visibility of these issues. Their blog site is at http://notdeadyetnewscommentary.blogspot.com/

Ohh very touchy subject!!Okay, I'm going to come from the other side of things. We only know part of this story.

The transplant process is a very big one, and it's not as simple as getting new organs, be it a new kidney, heart, or a set of lungs.When the patient is told they will need a transplant, there is a fare bit of testing to go through - blood tests, 24hr urine tests, etc.Then there is the mental testing to see if you will be mentally stable to go on the list. As I said before, it's not just magically getting new organs and all is okay - it's far from it! You need to be mentally prepared for the work that goes on before, during the healing process, and after txplant.Before hand, you have to face the reality that you could die while waiting on the list. Now, for a 3yr old, that wouldn't really come into play, as they wouldn't know much difference (sorry if that sounded harsh).During the lead up, there will be more testing, there will be blood tests every month, and she will gradually get sicker, so that means lots of medical treatment, though I doubt that would matter since she would be having treatment with her condition anyway.After transplant on the other hand is where it will get difficult. Even if one of her family members do match perfectly and can give her a kidney, the amount of anti-rejection medication and physiotherapy she will need during healing is heaps!!I have been told, for a lung transplant, I can expect to be taking no less than 30 tablets each day. 30!! Now, it's hard enough to get kids to eat their vegetables, let alone take something that they don't realise is going to keep them alive!! Trust me, my parents know that first hand!To be able to get someone who is 'mentally retarded' to understand that they need to take that medication so they can live a long happy life would only be part of the challenge.No one can guarentee that these organs will take to her body & that she will live a happy life. She could end up in more pain from the transplant, she could die in 6 months time anyway because of rejection. Transplant is no magical cure.Even if she ends up on the txplant list because none of her family members match her blood/tissue type, with her condition, no doubt she wont be near the top of the waiting list. I can see where the parents are coming from, but I can see where the doctors are coming from more. If they can save another person's life, who they know will look after themselves & not damage/ruin this gift of life, I know which patient I would be choosing.

I can say all this because I am waiting for new organs too.For the little girls sake, I would rather her live this happy little life she has at the moment, then have to go through all the pain in the world, not understanding what is going on, only just to pass away because the txplant did not work...

My daughter Ana had Hepatitis B up until she cleared the virus at age 13. Back when her viral particles were still off the medical charts a doctor here in Grand Rapids, MI, told us she would not be eligible for a liver transplant because of her limb differences. (Ana was born without legs and with shortened arms.) He also spoke of poor quality of life. We took her to a pediatric endocrinologist in Ann Arbor who would consider her for a transplant. Thank the Lord it does not appear that she will need that transplant, but shame on those doctors playing god, thinking they can determine which lives are worth living. Today, at the age of 15 Ana has begun her motivational speaking career and inspires people everywhere she goes. She is such a joy and has blessed so many. Here is a youtube video of her for your encouragement: http://www.youtube.com/watch?v=hOJEGoFgeQU

I am a mother of (thankfully!) four beautiful children. I know that I would move heaven and earth for them. However, I am also a nurse practitioner so I have some medical background. I don't agree with what the doctor said but there was also an underlying issue of the heart not being strong it seems from the article about Amelia and info gleaned from their website. So in order for anything to even go right the heart needs to be strong enough to withstand that type of hard labor that it will take during the transplant. I just think that we are getting ahead of ourselves with this one little girl. All the facts need to be weighed before we get up in arms about the medical community not placing value on "mentally retarded" or "special needs" patients. Whatever they or you call them they still have cognitive impairments and we do need to weigh the precious organ against the fact that the person receiving it will in fact be able to care for that organ(s) with the utmost care that it deserves. So before you attack the community that is meant to help you (medical) you should first take a step back and breathe before you do anything else. My son was "diagnosed" with autism and it turns out he just didn't want to do the test that day. So yes, perserverance does pay but be careful how far you challenge. The medical community of transplantation is extremely small and well connected and it can be either very open and welcoming to you or shut you down, no matter how far you fight. There have been others that were not that lucky.

Even if there is OTHER underlying condition like the heart, NO FAMILY SHOULD HAVE TO SEE A PAPER WITH HIGH LIGHTED WORDS that highlighting MENTAL DISABILITIES, OR OTHER DISABILITIES, as even PART of the reason for NOT doing the transplant. This story is a HORRIFIC for just the very reason of the use of the disability and the high lighting and some of the other comment about quality of life. LET ALONE the fact that this beautiful child was refused the transplant. They offered no option for IF HER HEART GOT STRONGER that so has been said. This alone tells me they put more weight into denying the transplant on her mental disability and less was based on her heart condition. NO ONE SHOULD BE PUT THREW A MEETING like that. It sure did not sound like the social worker was even trying to be helpful to the family when the news was broken to them. At the very least the negative way this meeting took place ANGERS ME COMPLETELY. Its one of many reason I fight for my kids and family via my website www.mumonamission.org discrimination is discrimination whether a law some how permits it or not. Just because it might be better or easier or there NOT enough organs, or what ever the other reason NO EFFICACIOUS should be on the disability for a transplant or ANYTHING that EVEN MIGHT REMOTELY stand a chance of saving a life or improving length of life, or quality of life. My battle might be much smaller than this but my kids deserve an education that will give them an EQUAL chance to make something of there life, THIS FAMILY DESERVES MORE TIME WITH THERE BEAUTIFUL CHILD.

I agree that the meeting with this family was handled extremely badly. Additionally - the family is offering to find a donor within their own family (and presumably wouldn't even need to be on the wait list). I hope they will go elsewhere where they will be treated better.

Wow Ellen, I'm in tears reading this and so shocked. It's amazing what can be done when you shine the light on an injustice. Now CHOP knows we're watching and hopefully that continued pressure will have an impact on how they evaluate these cases. Unreal.

I don't think we're getting the full story here. Her disorder is very complex. It's hard to say what else might have prompted the transplant denial. Hearing the hospital's side of it might be good as well. If it's just for her mental disability, and she has someone to care for her who can help her manage, then yes, denying her that is wrong. However, there are also a limited number of organs to go around, and they do want to give it to someone who has the best chance of success, otherwise an organ is wasted and the patient has had a whole lot of suffering for nothing. If her health is precarious for other reasons, which is a possibility, then she is not a good candidate for transplant. I understand that for the parents this is heartbreaking, but would like to hear the doctor's side too. This is coming from someone who will most likely need an organ transplant in the future, so I am trying to understand both sides of it. No, she is not "less worthy", but if she is less likely to survive with that treatment, it's a bad idea all around.

This is an emotional issue and I am so glad that both sides of the issue are being aired.We don't know the whole story but the paper you cite shows a significant bias when medicos consider transplants and kids with MR (an accepted medical term in the US btw).

I know this is an older post but the issue is still very current. We have four adopted children with Down Syndrome, the youngest two we just recently adopted. Our baby girl is two years old and was seen today by a pediatric cardiologist for a check on her heart since at least half of all people with DS have heart defects. We had been told she had a heart defect but it was very mild and would not require surgery. Today we found out her heart defect could have been repaired at birth but was not and is so severe now that it has caused irreparable harm to her lungs. She would most likely die during a procedure to even attempt to repair her heart. Basically she is terminally ill. When I asked the well respected, younger doctor if she could be saved by a lung transplant he said that was a possibility BUT, "People with Down Syndrome are not considered candidates for transplants". It was then that I lost it. My child is dying who along with her siblings are our world and you are telling me she is not worthy of a transplant?!?!?! I am speechless. I am in shock. These are my children who bring sunshine, joy and love into so many lives everyday. These are my children who can read, write, count, spell, know colors and shapes, sing enthusiastically with their favorite songs, love each other fiercely and do not know anything but goodness. And they are not WORTHY!!!! I will begin to fight this today and I will not stop. My children offer more to this world than most people I know. This is discrimination and completely unjust. If you do not agree it is because you do not have the privilege of having a child with DS. Thanks for this post.